期刊文章%@ 1438-8871 %I Gunther Eysenbach %V 10 %N 2 %P e18 %T自我报告潜伏者和在线患者支持小组海报之间的授权差异%A van Uden-Kraan,Cornelia F %A Drossaert,Constance HC %A Taal,Erik %A Seydel,Erwin R %A van de Laar,Mart AFJ %+行为研究学院，特温特大学，邮箱217,7500 AE Enschede，荷兰，+31 53 489 3876，c.f.vanuden-kraan@utwente.nl %K在线支持小组%K患者%K潜伏者%K授权%K乳腺癌%K纤维肌痛%K关节炎%D 2008 %7 30.06.2008 %9原创论文%J J医学互联网Res %G英语%X背景:访问在线支持小组的患者在各种方面受益。我们早期的研究结果表明，参与在线支持小组对参与者的“被授权”的感觉有深远的影响。然而，大多数关于在线患者支持小组的研究都集中在这些小组的成员上，他们通过发布帖子(海报)积极做出贡献。到目前为止，人们对“潜伏者”(即那些不积极参与发布帖子的人)的影响知之甚少。目的:在本研究中，我们探讨在线患者支持小组中的潜伏者是否与张贴者获利相同。方法:我们使用搜索引擎谷歌搜索互联网，确定所有荷兰的乳腺癌、纤维肌痛和关节炎患者在线支持小组。19个团体的所有者发出了完成在线调查的邀请。在在线问卷中，我们询问了关于人口和健康特征、在线支持小组的使用和满意度、授权过程和授权结果的问题。这项在线问卷由528人完成，其中109人(21%)认为自己是潜伏者。 Results: Lurkers (mean age 47 years) were slightly older than active participants (mean age 43 years, P = .002), had a shorter disease history (time since diagnosis 3.7 years vs 5.4 years, P = .001), and reported lower mental well-being (SF 12 subscore 37.7 vs 40.5, P = .004). No significant differences were found in other demographic variables. Posters indicated visiting the online support groups significantly more often for social reasons, such as curiosity about how other members were doing, to enjoy themselves, as a part of their daily routine (all P < .001), and because other members expected them to be there (P = .003). Lurkers and posters did not differ in their information-related reasons for visiting the online support group. Lurkers were significantly less satisfied with the online support group compared to posters (P < .001). With regard to empowering processes such as “exchanging information” and “finding recognition,” lurkers scored significantly lower than posters. However, lurkers did not differ significantly from posters with regard to most empowering outcomes, such as “being better informed,” “feeling more confident in the relationship with their physician,” “improved acceptance of the disease,” “feeling more confident about the treatment,” “enhanced self-esteem,” and “increased optimism and control.” The exception was “enhanced social well-being,” which scored significantly lower for lurkers compared to posters (P < .001). Conclusion: Our study revealed that participation in an online support group had the same profound effect on lurkers’ self-reported feelings of being empowered in several areas as it had on posters. Apparently, reading in itself is sufficient to profit from participation in an online patient support group. %M 18653442 %R 10.2196/jmir.992 %U //www.mybigtv.com/2008/2/e18/ %U https://doi.org/10.2196/jmir.992 %U http://www.ncbi.nlm.nih.gov/pubmed/18653442